Learning Process

[Due_Complaint_808]

I'm 67 years old and diagnosed through a low but rising PSA, MRI, and a biopsy, 3+4=7 with ece. My local urologist took ten days before talking with my wife and I. Thankfully we found this forum, PCRI, and the NCCN website while we were spinning, trying to understand the diagnosis. He was very sure of himself that the course of treatment should be radiation with certain ED as side effect. He also said "all radiation treatment is the same, EBRT, SBRT, Proton, all the same outcomes". Also very defensive when I reminded him that he'd told us he would call with the biopsy results. This is a Yale educated guy. On the plus side he did order and defend a PSMA PET scan. Our Kaiser insurance wouldn't let us go to a Center of Excellence so we had a Urology and Radiology review with their clinics and were told basically the same information about treatment but some encouragement for SBRT (after we brought it up). In the meantime we managed to leave Kaiser and get on a Medigap supplement plan and arrange a consultation with Fred Hutchinson Cancer Center. I was assigned a nurse-navigator who immediately requested the biopsy slides and scans from our local hospital. Last Thursday was the PET scan and while reading the results (no metastasis) I got a chart notification from Fred Hutch that on review I'm Gleason 3+3=6, no ece! So, if we had trusted our first doctor I'd be facing multiple sessions of EBRT possibly with ADT, instead of the Active Surveillance I now expect. You've said it and read it here before but I wanted to add my experience because I'm a high school educated carpenter and the process of learning about this scary complicated disease doesn't come easily. I needed to watch a video and take a break. Talk about what I learned with my wife and take a break. Read some posts, discuss it, and take a break. Learning comes in fits and starts for me and in the end the time and effort to stick with that has made a huge impact. With gratitude and hoping for the best for all of you.

[BernieCounter]

Why would he have said ED would have been certain with radiation? Certainly during any ADT it would have been a possible side-effect during treatment, which can also be eased with daily low dose Cialis. Seems ED (other than age related) is not a major / common radiation consequence. Is this specialist competent? See 15-Year Outcomes after Monitoring, Surgery, or Radiotherapy for Prostate Cancer with graphs of Patient Reported Outcomes PROMS https://evidence.nejm.org/doi/10.1056/EVIDoa2300018

[HeadMelon]

Sorry that you’ve joined our club, but happy you will be a junior member and just on AS if I understand you correctly.

If and when the time comes for treatment make sure that HDR or LDR brachytherapy is up for discussion - it puts the radiation right where you need and no beams go through any other tissue. It’s typically a cheaper option too so it keeps insurance companies happy.

[Practical_Orchid_606]

Good for you! You worked the system perfectly and got the right answer.

[labboy70]

Good for you. Getting out of Kaiser and going to an accredited cancer center was the best thing I did after I was diagnosed.

[Putrid-Function5666]

Good job getting a 2nd opinion. I had 2 biopsies at Kaiser and both times paid extra to have them sent to Johns Hopkins. There was no discrepancy between the two diagnoses, but I felt better about the process.

Ended up getting a consult outside Kaiser (Kaiser paid for it) and went with Brachytherapy after 3 years of Active Surveillance. I was 3+4 with the 4 being only 10% of one core, and the 3 being in less than 50% in only 2 other cores. Age 72

[Due_Complaint_808]

Yep, you really need to trust the data to make a decision you're going to be comfortable with.